Wednesday, March 10, 2010

Awareness is the Start

For the first time in my life I am taking pride in the work I do. When I worked at the video game store my job was about me and trying to break the region Game Informer sales record. When I worked at the racing school is was about me being paid to drive fast. Now though my job is about telling my story and trying convey that there is hope and to bring about awareness.

In my presentations I am amazed at how much little people know about autism. I guess I shouldn't be because I am just as uniformed on how the "normal" person works.

At one of my recent presentations someone asked me if I could simply, "ignore the drums". For me, the sound of drums is a violation of every sensory nerve in my body. Within 2 seconds I can feel the sound throughout my body and it feels as if I am being burned throughout my body.

I use this sensory story about the drums in most presentations and to the person who hasn't experienced this I know it's hard to understand. I've been asked the "ignore" question a couple of times and I take it as they think I have the choice. Trust me when I say I wish I had the choice, but where I am lucky is that I am able to voice what it is that creates such a brutal pain.

This is why awareness is key. The autism spectrum isn't a choice and for some on the spectrum they will not be able to express what is causing the pain. To the uninformed it may seem like a choice, but it's not.

I don't want to simply raise the awareness of the fact that more and more people are on the spectrum (they are), or simply that eye contact is difficult (it is), but I want to raise the awareness of what it feels like. From this I hope that I get the chance to express that there are therapies that work, but these options have got to be utilized as soon as possible. There's a race going on, a race against concrete. Tomorrow I will post on the importance of this race and why this race must be won.

1 comment:

Thank you Aaron for seeking people out and sharing your experiences and graciously asking us to share as well. I am the mother of 4 children. My oldest son is 30. He is handsome, intellegent, kind, caring and on the spectrum. I will refer to him as WW because he is such a private person. I also have 2 daughters ages 27 and 22 who are 'typical'. My youngest son is 12. I will call him Rob because that is his name and he is not a private person. We discovered that my oldest son was on the spectrum when my youngest son was diagnosed as also being on the spectrum.

You were talking about your behaviors not being a "choice". No one chooses to be on the spectrum. My oldest son doesn't "chose" to lock himself up in his 'Kansas" comfort zone. For him just walking past that thresh hold of his front door creates much anxiety so he rarely leaves his home. My questions re one of WW's behaviors is this: Have you ever lived with social anxiety so great that just being around people was much like you described regarding the sound of drums? If you have experienced this sort of anxiety, how did you overcome it? This is not a behavior in my son Rob. I have learned from having 2 sons on the spectrum that ASD is much like people or even like snowflakes. No two are ever alike. To me that is rather remarkable.

Thanks for encouraging me to speak up and caring enough about people to invite and encourage us to share our lives with you as you have shared with us.

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